Quote:
Originally Posted by stdoubt
I was diagnosed with MMN a few years ago - initially just some minor weakness in my right hand. Gotta say my consultant wasn't really very helpful, but after a little research of my own, I decided that I'd prefer not to seek treatment. My main reason (apart from avoiding blood borne infections - i am a bit paranoid  ) was that I read that IVIG treatment only worked for a few years, then it all started to go downhill again. I figured that it would be better to wait until (if) my symptoms got serious before treatment, as that would be when I'd really need an effective treatment.
Now I have another symptom (weak calf) and have done a little more research, I am beginning to wonder if I made the right choice. Wondering about the opinions of anyone who has taken the treatment, and those who have not.
Also, how does insurance typically take to IVIG for MMN? Will it pay for the whole treatment, or is it out of your own pocket? |
I was also diagnosed with Multifocal Motor Neuropathy, My insurance paid 100 % when i was receiving the treatment in a doctors office. Now im receiving it in the hospital ( Outpatient) and i now i have to pay 10% after what the insurance has paid. Are you on disability ? If not you might want to look into that. Im on social security and im 25 and it pays alot better than i thought. Also i think you made the wrong choice about putting off the treatments when your symptoms started showing, reason being said is that i did the same thing and the worst mistake i ever made because i was a week or two from being on my death bed. I am also taking IVIG once every 2 weeks, and on Rituximab ( chemotherapy) very good treatment, a month or so after my first treatment of Rituximab I've started to regain some strength and walking a little bit better. On the Rituximab treatment they have me setup a treatment every 10 weeks for 2 years. Really the best medicine for this disorder is to keep high spirits, keep a good attitude as much as possible, and stay as active as you can ( whatever your body will allow ).
God Bless Everyone and their families that have been affected.
Good Luck,
Steven